An Open Letter To Every OB/GYN On The Planet: How To Deliver A Down Syndrome Diagnosis, The Right Way.

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Dear OB/GYN,

I’m the father of a two year old boy named Noah who was born with Down syndrome, and whom we love very much. I understand that in the course of your day to day work you often have the difficult responsibility of telling parents news they never thought they would receive – that there’s a good possibility that the little boy or girl in their mothers womb is going to be born with Down syndrome.

Why I’m Writing You This Letter

My hope in writing you this letter is to tell you some of the things I wish I would have known the day we found out our son was born with Down syndrome. Our son did not have a prenatal diagnosis of Down syndrome, and our amazing pediatrician did a great job of calming our fears, honoring the life of our boy, and letting us know we were in this together as she delivered Noah’s diagnosis. However, as you’ll read below, our interactions with our OB/GYN were not as positive.

As an OB/GYN you will likely be the person who delivers the prenatal diagnosis of Down syndrome. Hopefully this letter will help you to deliver a Down syndrome diagnosis to your patients in a way that honors the child, and gives parents hope and encouragement.

I can only imagine what you must feel the moment you first become aware that you’re going to have to give a Down syndrome diagnosis to a new parent, one who likely has no idea the news that you’re about to drop on them. But the truth of the matter is you’re still going to have to have the conversation, and as the first point of contact for a new parent of a child with Down syndrome you have a lot of influence and authority. Those parents are going to be clinging to every word you say, and watching every facial expression that comes across your face. How you deliver the Down syndrome diagnosis to those parents could be a matter of life and death, literally.

When our son Noah was born, my wife’s OB/GYN’s first words to us were “I’m so sorry” followed by “Would you like some antidepressants?” We were scared, anxious, and worried; the last thing we needed to hear from a medical professional was “I’m sorry.” And my wife certainly didn’t need antidepressants.

But our story isn’t unique. In fact, I’ve heard from countless parents of children with Down Syndrome whose OB/GYN did a poor job of communicating to them their child had Down syndrome, or even worse tried to convince them to “terminate the pregnancy.” Sadly, a lot of parents take their OB/GYN’s advice and abort their child. You may be aware that approximately 92% of children diagnosed with Down syndrome are aborted. This shouldn’t happen. Doctors, like yourself, have to do a better job of delivering a Down syndrome diagnosis. You have to give parents true, accurate, and up to date (not inaccurate and outdated) information about Down syndrome.

The stakes are to high.

A Reminder Of The Oath You Took

When you became a Doctor you were required to take the Hippocratic Oath which states:

“…That I will lead my life and practice my art with integrity and honor, using my

power wisely…That above all else I will serve the highest interests of my patients through the

practice of my science and my art…”

Using your power wisely means that you understand that as a Doctor and the first person to tell a new parent that their child is going to possibly be born with Down syndrome that you have tremendous power, and it’s been famously said that “With great power comes great responsibility.” And that responsibility is toward your patients (both in, and out of, the womb), to whom you have sworn to serve their highest interests.

With that in mind, I wanted to share a few thoughts on how to deliver a Down syndrome diagnosis to parents that will allow you to use your power wisely, and serve the highest interests of all your patients:

5 Ways To Properly Deliver A Down Syndrome Diagnosis

1. Say “Congratulations,” Not “I’m Sorry”

It doesn’t matter if the child is diagnosed with Down syndrome prenatally, or after birth (as in the case of our son,) always congratulate the parents for the child they have conceived, or the child that was just born. As I mentioned, my wife’s OB/GYN’s first words to us after our son was born was “I’m sorry.” Don’t say that.

This is the birth of a child, not a funeral. And the birth of a child always calls for congratulations.

2. Keep A Positive Demeanor

I know you’re nervous, you’re about to have an awkward conversation with some parents, and you have no idea how they’re going to respond to what you’re about to tell them, but please stay positive. After all you’re talking about someone’s child. You’re the professional and the parents are going to follow your lead.

If you look like it’s the end of the world, they may think it is also. But it’s not. “It’s” a beautiful new baby who is longing to meet his or her new parents. So please, please, please get over your fear and nervousness, put a smile on your face, and tell them that their new little one has a surprise for them, then help them understand what causes a child to be born with Down syndrome. This is important as some mothers think it’s their “fault” that their child has Down syndrome, and that they may have done something wrong to cause it.

3. Tell Them There’s Never Been A Better Time In The History Of The World For A Child To Be Born With Down Syndrome

There’s a good chance that you don’t personally know anyone who has Down syndrome, and an even better chance that you aren’t up to date on the current information about what life is like for children with Down syndrome. But you should be. I’ve heard stories about OB/GYN’s telling parents that children with Down syndrome suffer, won’t ever be verbal, are sick all the time, and have all sorts of health problems. Sadly, most of these OB/GYN’s are telling their patients this information based on information that is decades old from when they were in medical school. What’s even more heartbreaking is that this inaccurate information causes many of their patients to make a fear based decision (aborting their child) that they regret for the rest of their life.

I hope that you would never tell an already scared, worried and shocked parent this harmful information. The truth is, there really has never been a better time in the history of the world for a child to be born with Down syndrome. Now, there are countless resources available to help people with Down syndrome reach their full potential. Today people with Down syndrome go to college, have careers, drive, get married , are public speakers, become actors and actresses, play (multiple) musical instruments, live independently, and live meaningful and productive lives.

In fact, American Journal of Medical Genetics recently published a study that showed that parents of a child with Down syndrome have a more positive outlook on life because of their child with Down syndrome. In other words they are happy (not sad and depressed) because of their child with Down syndrome! I recently told a reporter from Headline News that there’s no reason to be sorry for us, or for Noah…and I meant it!

It’s important that you paint an accurate picture of what their new child’s life could possibly be like, and an accurate picture is a hopeful one. When you took the Hippocratic Oath you swore that you would use your power (and influence) wisely, so be sure you don’t unwisely and irresponsibly use this power and influence to scare someone into making a decision to end the life of their baby; especially if the information you are giving them to base that choice on isn’t accurate. Give them hope, not fear.

The blood of that little baby is on your hands if you try to tip the scales towards fear and worry and in turn cause them to “terminate their pregnancy.” Remember, you are to use your power wisely, and serve the highest interests of your patients. That little baby in the womb is indeed your patient. Be sure you take good care of him or her, that little baby’s life depends on you.

4. Let Them Know You’d Be Happy To Connect Them With Another Family Raising A Child With Down Syndrome That Can Answer Their Questions And Give Them A Window Into What Life Is Like Rising A Child With Down Syndrome.

When you tell a parent that their little child has a chromosomal abnormality they are going to be scared. They will more than likely cry. That’s ok, it’s a normal thing to do. They are mourning the loss of the imaginary child they made up in their mind, the child that didn’t have Down syndrome. As they morn the loss of that imaginary child, they will also begin to construct a new child, their child with Down syndrome.

Those parents will probably be like me, and not know much about Down syndrome. They may begin to imagine their new child based on their inaccurate information about Down syndrome, and this will cause them a lot of unwarranted fear. People are scared of the unknown, and Down syndrome will likely be an unknown for a lot of your patients receiving the diagnosis.

It’s your job to help make some of the unknown, known, and by doing so hopefully remove some of their fear so they can walk forward in hope.

One of the best ways to help new parents learn about Down syndrome isn’t by giving them an outdated pamphlet, and telling them to go home and “think about it.” It’s by introducing them to another family who has a child with Down syndrome and allowing them to see what it’s like raising a child with Down syndrome, first hand.

My wife and I are currently expecting another child, and are using a different OB/GYN this time who actually asked us if she could pass our contact information along to one of her other patients who is expecting a child with Down syndrome, to which we quickly and excitingly responded,”Yes!”

I would encourage you to do the same. We have a Facebook page where lots of families share pictures and stories of their children with Down syndrome, and we also have a website where we share 60 second videos of our son Noah just living life and doing things that typical kids do.

If you don’t know a parent locally that has a child with Down syndrome I would encourage you to reach out to your local Down Syndrome support group. They would be thrilled to give you a parent contact. In addition, you can email me and I’ll happily provide you with my information that you can give out to any of your patients. My wife (who is a pediatrician and the mother of a child with Down syndrome) and I would love to talk to any of your patients anytime about what it’s like rising a child with Down syndrome, and I mean that.

As a OB/GYN your knowledge about Down syndrome only goes so far. The way you present the diagnosis to parents will largely be swayed by your opinions, experiences and stereotypes of people with Down syndrome, and the facts about Down syndrome. It’s ok to be honest about that with your patients.

You’re a Doctor, not God. You aren’t expected to know everything about everything, so please take that pressure and burden off of yourself.

The best thing is to tell new and expecting parents that you don’t personally have a child with Down syndrome (assuming you don’t) but that you would like to connect them with a parent who does. Tell them it may help them to see that raising a child with Down syndrome is not as scary as they may think.

I think connecting an expecting parent of child with Down syndrome to a parent of a child with Down syndrome is the most responsible, helpful and honest thing you can do to help a parent who has just received a Down syndrome diagnosis. In fact, I’m convinced that if every woman who’s baby has received a prental Down syndrome diagnosis could hang out with our son Noah for just thirty minutes the abortion rate for children with Down syndrome would be almost zero.

5. Don’t Suggest That The Parents “Terminate The Pregnancy” Because The Child Has Down Syndrome

I can’t tell you how many times I’ve been told by another parent of a child with Down syndrome that their Doctor continually suggested (to the point that they felt pressured) that they “terminate their pregnancy.” This suggestion goes against the Hippocratic Oath which you swore to abide to. It ‘s not a wise use of your power and influence, and does not serve the highest interest of your patients; either the baby in the womb who is your patient and whom you are suggesting to their parents that they murder (abort / terminate) him or her, or the mother who is also your patient whom you are suggesting murder their child and live with the guilt and regret of their choice for the rest of their life.

As I’ve already mentioned, as a Doctor you have a tremendous amount of influence with your patients, and they are looking to you with trust for guidance, hope, and encouragement. Regardless of what your views are on abortion, and rather or not you are “pro-life” or “pro-choice,‘ (I’m fully, 100%, always for life by the way) I’m sure we can agree on the fact that selectively aborting a child based solely on the fact that they have three copies of their 21st chromosome as opposed to two is wrong. In fact, some states have even made it illegal to abort a child due to a genetic abnormality.

So please don’t plant the seed of abortion in your patients mind simply because there’s a chance their child is going to be born with Down syndrome. Instead, plant seeds of hope, encouragement…and life.

Abortions never solve any problem, rather they create a multitude of many more.

The Future Of Down Syndrome Is In Your Hands

As an obstetrician the future of children with Down syndrome is literally in your hands. You have the ability to help parents receiving a diagnosis of Down syndrome to understand that there truly has never been a better time in the history of the world for a child to be born with Down syndrome. You need to let them know they aren’t alone, and that having a child with Down syndrome is nowhere near as scary as they probably think that it is.

As you give them current and up-to-date information on Down syndrome, and help connect them with other parents raising children with Down syndrome with a smile on your face and “congratulations” on your lips you are helping to replace some of your patients fear and anxiety with hope and truth. And that’s a great thing.

Parents like me love our children, and honesty wouldn’t change one chromosome on them. Really, we wouldn’t. But even more than that than I believe that all humans are created in the image of God, are fearfully and wonderfully made, and deserve a chance at life.

As an OB/GYN I believe you also love life, and no matter how many times you deliver a baby, or hear a child’s heart beat on a sonogram you never get over the wonder of new life. I hope this letter helps you to have that same sense of wonder for all new life, no matter how many chromosomes that tiny little life has.

Thank you for all that you do, and for playing such a big role in a family’s life. Parents never forget the birth of their children. For the rest of my life I’ll never forget the way our OB/GYN handled the birth of our son Noah. Those two words “I’m sorry” will forever be ingrained in my mind.

I hope that your patients remember different things about you.

I hope they know you value all human life. That you love their child. That you love them. And that true love doesn’t count chromosomes, it sees beauty in all life.

For additional information be sure to check out our New Parent Guide To Down Syndrome, and this excellent list of “What To Say To Someone Who Has Received A Down Syndrome Diagnosis” and please be sure to share this letter on your Facebook Timeline, Pinterest, Twitter and other social media channels so that as many OB/GYN’S as possible will see it, and hopefully change the way they deliver a diagnosis of Down syndrome to expectant parents. If you have a blog you have my permission to link to this post in a post of your own, and please be sure to enter your email address in the box below to stay connected to our story!

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About Rick Smith

Hi, I'm Noah's Dad and I'm passionate about giving the world a window into our life as we raise our son who was born with Down syndrome. I also enjoy connecting with other families, so let's stay connected.

Comments

It is so uplifting when I read from parents like you. My daughter was diagnosed with DS when she was born and even with the challenges of having a special needs child in the Caribbean she is a joy to us. Thank you!!!

As a parent of a son with Down Syndrome who is now 32 years old, I have voiced these same things and so happy that you addressed this issue…and you put into words exactly what needs to be said. I had an awesome gynecologist who did come into my room and hold my son “Jeremiah”, and was wonderful, on the other had when the Peditrician came in he told me that my son was a Mongoloid which was not the term used then…I just want to say thank you so very much for posting this, and how much I enjoy reading about Noah and your walk with him. God never makes mistakes, and Bruce Carol sang a song “Sometimes Miracles can hide” and felt as though he had put our story into song. We as a family have learned so much from Jeremiah and it has been a blessing in every way….

Hi, I know you are trying to be supportive, but phrases like ‘they are so loving’ do nothing to promote the fact that our children are all individuals, with their own personalities and characters. Instead it promotes a stereotype of what people with Down syndrome are expected to be like.

Saying a child is loving is not taking away from his or her individuality. My DS son is 45y/o and that is one of my favorite things about him. We have been around special needs people for a long time and I am so grateful that being loving is one of the traits of Down’s Syndrome. There are other traits associated with other forms of special needs and I am thankful they are not a trait of DS. I don’t understand why you would be sensitive about this. They have other traits too like enlarged tongues, or slanted eyes, or short statue, but these don’t take away from their individuality. When I meet someone with Down’s I do not expect them to be just like my son, everybody is different.

Our doctor did (IMO) a great job of telling us @birth. Still a shock, to be sure, but his approach was “your daughter has Down syndrome. this could result in some intellectual disability and developmental delays. This isn’t as big of a deal as it used to be, but we do have a list of things that we know we’ll need to monitor her for, as kids with Down syndrome have tendency to develop specific problems – so we’ll just watch for those and deal with them if they show up. What we *really* need to be concerned about right now is her heart.” And we went from there to deal with her Tetralogy. We still “grieved” of course, but I really respect him for the way he relayed the news. No “apologies,” no sadness, just kind, and firm about what needed to get done *at that moment.* And to look at her now – she’s 4, and makes us proud every day.

That seems like a really great way to present the news–it acknowledges that there will need to be some changes in how you proceed from that point without suggesting that those changes need to include the death of the baby. It lets you know that the diagnosis can be dealt with and LIVED with, and here’s where that process starts. 🙂

Thank you so much for that! I remember our prenatal diagnosis was super devastating! 1 in 8 chance that he would be born with down syndrome. She made it seemlike a definite death sentence for him. And to someone who doesn’t know anyone that’s how we took the news. All I could think of was my little boy growing and moving inside me. It wasn’t until we came home and did some research that we started to see abrighter sis

Your great article reminded me of a friend that asked for my opinion (a few years ago) on prenatal screening due to the age of the mother. This was my response:

On the screening, we had a number of miscarriages between our older son and our daughter (with ds), and knew that we had no intention of aborting the pregnancy regardless of the results, so we chose not to do the screening. Plus there is a small chance the screening can cause a miscarriage itself, and we weren’t prepared to take the chance. We were prepared to accept the challenges of parenthood, regardless.

That being said, I have to say that I was pretty overwhelmed when we first had our daughter – I didn’t really know what it all meant, or how it would work. I suspect most people think this way – we think it would just be so different than what we could handle. However, we very quickly found other parents of children with DS and learned that it really isn’t much different and I think that would be hard for anyone, not in our shoes, to understand.

There is so much that I want to say here, but am honestly having difficulty finding the words. The whole issue has become very emotional to me – I’m not sure why. When I hear that someone aborts a pregnancy because of something like DS, I get extremely angry and sad – too much empathy I guess. And I would consider myself “pro-choice”.

I think I would sum it up this way: Parents who are trying to have a child are going to unconditionally love any child that they have – why would they want to give that away?

Because sadly, there are people who don’t unconditionally love. Not their children, not anyone. And they don’t want anything less than a “perfect” child, because that will make the parent a “failure” in the eyes of others.

Some of us cherish every child placed in front of us, for however long they are entrusted to us. And that is why we are natural caregivers, teachers, nurses, pediatricians, etc. Others….. well, they don’t cherish. How sad that they miss out on so much of life’s awesome moments…….

She is a real doll! I have a daughter who is 16 and has Down Syndrome. She is beautiful, loving, smart and fun. I wouldn’t trade her for anything in the world!
God Bless all these wonderful children/adults!

What a beautiful little girl!! I have an 18 month old grandson with Down syndrome. We love him completely. He’s had some issues but he is tough and
will be ok. His parents are wonderful with him and he gets everything he is
entitled to ( therapies ) and is up to date on all his checkups, he has even been
to the dentist already. I am so proud of everyone in his loving family !!

Unfortunately, I don’t think many medical schools require the Hippocratic Oath anymore. I know my husband’s didn’t. Probably because the H.O. also says that the doctor will NOT participate in abortion….and medical schools won’t stand for that, sadly.
So, you might want to re-word your essay, even though all doctors SHOULD stand by the H.O.

A Thank you so much for that! I remember our prenatal diagnosis was super devastating! 1 in 8 chance that he would be born with down syndrome. She made it seem like a definite death sentence for him. And to someone who doesn’t know anyone that’s how we took the news. All I could think of was my little boy growing and moving inside me. It wasn’t until we came home and did some research that we started to see a brighter side and some hope! The other thing that we kept getting was the request to get an amino. I knew right away that was not an option. I was not going to put foreign object next to my son and possibly cause a miscarriage, when either way I was keeping him! They offered the blood test and told me it was 99% accurate. Now here’s the crazy thing, once we received a positive result of 99%, we were told that we should really do the amino now so we could be 100% sure!! As if being 99% wasn’t enough! I have a beautiful son that I wouldn’t trade for anything! Now, it hasn’t been that easy, he was in the hospital for 5 weeks due to Hirchsprungs disease, he has a G tube, and had heart surgery at 2 months old. But since then, he is doing great! He has recently been removed from 24 hour oxygen, and only has to use it at night. He eats only from the bottle (he doesn’t use the feeding tube at all) and even started eating baby food! My little boy is the biggest flirt with all the ladies! It is really sad though to think of the time when I was scared to have him. When I had the thoughts of if I could raise a baby with down syndrome. The time when I was told it was 1 in 8…and it sounded like a death sentence. If anything, it was a life sentence….of smiles and hugs and giggles and laughter…

Rick…sixty years ago a neighbor and friend had a son with DS. She had no idea because she knew no one with DS. On her first visit to her ped. he said “your child is a Mongolian Idiot…you will have to put him away by the time he is 7.” She was alone and had to ride the bus home with this info. He is in a group home and doing well 60 years later. Thank God we have so much info now and no more ( I hope) doctors like him.

As a physician who has had to inform parents of a probable Down syndrome diagnosis, I can tell you that I haven’t had very positive experiences. Parents have been universally devastated. I understand that this likely changes as they learn what this diagnosis means for their child, but an “I’m sorry” seems very appropriate at the time.

Thank you so much for leaving your comment. I hope you found some useful information in this letter. “I’m sorry” does nothing to honor the life of the child that is in the womb (or in our case, outside of the womb.)

Imagine how the parents would feel if instead of saying “I’m sorry” you said “Congratulations are still in order! You’re having a baby, just not the baby you expected, and I’m going to be there with you every step of the way until we meet this new little baby!”

Dear Doctor MB,
Almost universally, if you ask parents of children with Ds, they will tell you that they wish they hadn’t been told “I’m sorry”. It may seem appropriate to you as a doctor, but thousands of parents are telling you it’s not. The question is, will you listen to us?

Maybe instead say, “It’s okay.” My best friend is a doctor and he got his feelings hurt asking another doctor’s opinion on a possible diagnosis without explaining that it was his own mother exhibiting the symptoms (turns out they were wrong and she was fine).

As a mom with a child with DS, I have to disaagree with you. It helped me to have my doctor acknowledge my shock and sadness by saying “I’m sorry.” She was sorry for the sadness and shock my husband and I were experiencing, not sorry that we had a beautiful little boy whom she knew we would love with all our hearts. A doctor can say both “I’m sorry,” as well as, “There’s never been a better time to have a child with DS.” My emotions upon my son’s diagnosis at birth were intense, contradictory and wildly confusing. My doctor expressed the same dichotomy of emotions my husband and I did. It actually pissed me off when I had a social worker tell me, “Don’t cry. You have a beautiful little boy. Just think about how much joy he will bring you.” Duh! I felt insulted. Of course I thought about joy. He was already bringing me joy, because he was so stinking cute and funny and wonderful. However, the knowledge that he would face pain from medical procedures was, and is still, hard for me. Sometimes I cry about it even now, and my son is 15 years old. Let’s not pretend that DS is ALL sunshine and roses. It isn’t. There is tremendous joy, yes. I have learned a lot about life and happiness from my son. But it also hurts that he NEVER gets invited to sleepovers. The girls he falls in love with do not consider him a suitable partner. Why make parents feel guilty and ashamed of their grief in addition to feeling the grief? ALL emotions are appropriate when one’s child lives with DS. And by the way, most of the kids who “go to college” are kids with mosaicism, an uncommon type of Down Syndrome, in which normal intelligence is possible. I would never, ever condone aborting a child based on a diagnosis of DS. Neither would I pretend that confusion, sadness, and grief are something to be ashamed of. I say “Cry your tears, be the best parent you can be, whehter your child is diagnosed with DS or not, and stay open to the love coming your way.”

Actually, your comment about kids with DS going to college all having ONLY Mosaic Down syndrome is not only inaccurate but wildly false. I know several young adults with nondisjunctional Down syndrome (the most common form of DS) who are all successfully attending secondary education and pursuing meaningful career paths. Do not spread ignorance. Our children already fight an uphill battle of outside ignorance and prejudice. The last thing they need is that misinformation being perpetuated by someone who should know better.

Actually your comment about kids with Down syndrome going to college all having ONLY Mosaic Down syndrome is not only inaccurate but wildly false. I personally know several young adults with nondisjunctional Down syndrome (the most common form) who are all successfully attending secondary education and pursuing meaningful career paths. Do not spread ignorance. Our children already fight an uphill battle of outside ignorance and prejudice. The last thing they need is that misinformation being perpetuated by someone who should know better.

As a mother of a baby with Down syndrome the words “I’m sorry” are the worst words ever in a moment like that. Thank God we didn’t have that experience, but we did feel that something weird was happening with the midwife’s face and nurses talking. When we were in the room waiting for our little guy the pediatrician “Federico” came and told us that we had a very healthy baby, and that he thinks our baby has Down syndrome. And he told us that Vincent is like any other baby, he is going to grow like any other child with 46 chromosomes, and of course we have to work maybe a bit more, maybe we have to see a lot of different doctors, but that doesn’t mean that Vincent is going to get sick, is just to prevent. Then he told us to go home and love Vincent, he needs us and we are his parents. IM NEVER GOING TO FORGET THAT DOCTOR! (of course he gave us his number and names of other great doctors who loves to work with kids with down syndrome). (sorry for my English I try hard lol)

I was told by my gynologist that my son was likely to be retarded without the words “Downs Syndrome”…looked it up…I was alone (husband retreated…didn’t visit me in hospital). Cried and cried and all doctors consulted advised to give him up to institution (this was 1958), which I did. I am so sorry I didn’t give him a chance…he passed away at 2 and he was in a hell hole called “Willowbrook”. Regrets,,,but it was a different world then…children were called “Mongoloids” and were shunned.

Wow I am really sorry you had to deal with that, but I do understand it was in a day and age where they hid kids and people who were different from everyone else a truly terrible time to be different and you did what you thought was best 🙂 I had my son with DS in 1999 and the hospital still told me that if we wanted to there were homes we could send him to I was shocked to say the least not only was I dealing with my son being diagnosed with DS but now they were telling me I could send him away it made me so angry that in this day and age they would tell me that 🙁 I am so glad I kept my boy he is my pride and joy 🙂

My husband and I both decided before we ever got pregnant that if we were to get pregnant with a child with Down Syndrome that we’d never abort. There really are too many happy, highly functioning, independent people with Down Syndrome. I’ve met them. I’ve seen them working. I think they have just as good odds as the rest of us to live happy lives.

At the time my son, now 8.5, was born his diagnosis came as a complete and total shocking surprise. I was 24 and single nervous and excited about building a future for my child. My initial reaction was that of loss and mourning. I called off all visitors to the hospital and cried………, for about an hour. If it weren’t for all of the positive attitudes, kindness, encouragement, and most of all being treated as everything was as it should be that feeling of loss and despair could have easily lasted longer or turned into a depression. The sense of belonging and normalcy came not only from my family and friends, which there were plenty, but from every doctor, nurse and staff member I encountered in the hospital. The ONLY professional that managed to offend was my OB/GYN who upon discharging me from the hospital, clinically explained I was likely to experience postpartum depression and she would gladly write me antidepressants, which I never needed. Those first hours and days in the hospital were so influential about how I felt about my and my sons entire future. When I began reading other peoples stories online and connecting with other parents I realized just how fortunate I was to have such a positive experience. After all those years of med school one would think doctors could comprehend how heightened patients and parents awareness is during life changing diagnosis’s and what a tremendous effect their attitude will have on a majority of those people.

Please see lettercase.org too. I founded a nonprofit for chromosomal “variations” (not abnormalities!) and ordered several copies of both their “Understanding a Down Syndrome Diagnosis” and “Delivering a Ds Diagnosis” and I hand them out. Not only to OB/Gyn docs, but pediatricians, as they frequently give at or after birth diagnoses, hospital social workers and genetic counselors. Nurses can also benefit from this info!

Thanks for sharing, but I do not support Lettercase for the same reason the NDSS doesn’t, they promote abortion in their booklet. I do not believe it is every ok to abort a child, and can’t support or endorse any information that does. Sorry.

But I’m glad to see how you are using your passion to help Doctors better understand how to deliver a Down Syndrome Diagnosis.

i remember when i had my son, the doctors came in and told us at the worst time possible, when my whole family and my partners family was all in with us. it was horrible how they told us. i would never wish that upon anyone. as well our doctors told us he’d have to be institutionalized, and would require everything else. you know what. they were soo wrong. my son now 9 can speak sentences, will walk and talk to me. and is getting in two weeks, going on a disney dreamlift day. my son Douglas is a lucky boy. we are in a loving happy household. and i wouldn’t change it for anything else. we are happy with our two boys

Thank you for bringing this up we were the proud parents of our first child and daughter born with ds 27yrs ago on the 15th october Laura was 3 days old before we was told and actually I was told on my own the told me im sorry your child is a mongole they didn’t use down syndrome then and they said she would be a cabbage not do anything put her in a home and forget about her abd try for another baby then they phoned for my husband to come to the hospital then they told us together I was just 21, Laura did everything they said she would not do and more besides but sadly we lost her aged 19mths to myloide fibrosis a fom of leukemia which ds are more prone to we was blessed to have a ds child they give you so much love I woukd of had another ds child if could of done I live in England .

I found out from a geneticist when I was just 14 weeks pregnant. There I was in her office crying away and she didn’t even offer me kleenex, which was right next to us. Instead I got a deadline on when I can have an abortion. Well, I’m glad I didn’t listen.

Really great. We have a 10 year old son with DS. Finally someone is addressing the issue with the OB/GYN community. We have our own horror stories as well during this time. Thanks for mentioning the abortion issue which really is a horrible thing. I am appalled by all the mom’s I am in contact with through a online DS chat group that still say in their writings that it is okay to abort. What are they thinking? I live in NYC and woman here think they have to toe the liberal line even in this area. I am appalled by this. Can I get a copy of this article you wrote?

This is awesome!!! When our son Eric was born at Bethesda Medical Center in 1982 the Dr’s set my husband and I down in a room and told us “Your son is a Mongoloid..do you want to take him home or put him in an institution?”. Of course we were devastated, but we brought our child home…He is 31 years old…and a joy.

Beautifully said! I have a 28 yr old bro w/Downs & my mom found out after she delivered him. She was asked if she’d like to place him in a home w/other kids just like him because he would never be a productive memeber of society. Boy were they wrong!! He’s my hero & loved by the community! Keep up the great work!

This letter brought tears to my eyes. My husband and I spent 6 yrs trying for our first and decided at that time not to get amnio as it could trigger a miscarriage. Piper was typical and we thought she would be our only. A year later, I got pregnant (not even trying). We had some unusual readings during the ultrasounds, but nothing definite; none pointed to any severe medical issues we might need to prepare for, so we made the same decision about amnio. When Grace was born, no one told us they suspected she had DS. I had to ask the peds dr 24 hours later if she did. Even then, she didn’t want to commit. Finally, my OB came in and let my husband and me know – but still with hesitation. He did not offer condolences, but he wasn’t very positive or congratulatory either. And everyone was afraid to say it (law suits, I imagine). It was a difficult time to say the least. I began poring over books and the web, and finally found the positive exeriences I needed to hear. Grace is now 8, in ballet class and rec socceer (where she tells me she was “awesome” last game) and in Special Olympics. My girls are the best of friends. Grace has made me stop and live in the moment, and my patience has grown by leaps and bounds (it had to or I might’ve gone crazy – she does do things at her own pace). Wouldn’t change a thing except for my experience with the hospital. And I DIDN”T want to hear “I’m sorry” from anyone. What my mom said was perfect, “She’s beautiful, she’s ours, and we’ll lover her.”

I was born in 1981 when my mother was 43 years old. Mom had been pregnant four times before me, managing to carry only one baby to term and he’s 17 1/2 years older than me. Gives you some idea of how happy and nervous they were about me coming along. Mom went to an OB/Gyn as soon as possible because she was worried about miscarrying. His response, instead of congratulations, was that it would be better if she DID miscarry or even have an abortion as I’d almost assuredly be born with Down Syndrome due to her advanced age. Thankfully Mom and Dad have never been believers in abortion and they wanted me too badly to listen to the quack but my life could have ended in the womb had I been born to someone who did listen to that doctor. God bless the parents of these amazing children. Thank y’all for choosing life and love. I hope the doctors listen to this article and to the parents.

I now feel blessed that our doctor told us as he did. He came into the room and opened with “Nicky is adorable!” then gave me all the positives — all the important numbers (heart rate, oxygen level, etc.). He’s charming the nurses , etc. Then said “I do want to tell you that based on some indicators I’m seeing I believe your son has Down Syndrome. Here are the things I’m seeing,….. “. Then just broke it down for us matter of factly in basic terminology of things he knew not things he believed MIGHT be. It did not do anything to alleviate the shock value or the “grieving” process for a life that was going to be quite a bit different than one we envisioned, but it didn’t make us feel like this was so devastating, that even the doctor was sorry. I know this would not be an easy conversation to have but a child’s life is a miracle and nothing to be sorry about.

My first son Matthew was 6 months old when we went for his checkup. It was then that my doctor told me he had Down. My doctor was very old school (and older 60’s or 70’s I think). He suspected at birth but chose to let us take Matthew home to love and care for him like any of the other thousands of babies he’d delivered. I bless him for that. Although I admit I was in shock to hear this initially, I looked at my boy who was the same smiling and happy and the joy of my life for the past 6 months and I realized I wouldn’t change a thing. Yes, I was afraid when I read the meager and grim information available 41 years ago. It painted a bleak picture. This picture was so totally wrong. Matthew was an amazing boy who was loved by everyone he met. He played, sang, made many,many friends, competed in Special Olympics and loved swimming. I was proud to be his Mom. I was only blessed to have him in my life for 16 years when he died of a brain tumor. The worst day of my life when his ended 25 years ago. God Bless you and your family Rick and please give Noah a big hug for me.

I’m a speech-language pathologist and I work with children with Down’s syndrome on a regular basis. They and children with autism are my absolute favorite kids to work with! I’m also 6 months pregnant and meeting with a new OB/GYN next week. (I just recently moved and so need a new doctor). I want to broach this subject with her and find out how I can help if she isn’t sure how to deliver the news of a DS diagnosis to parents. Any suggestions of how to bring it up?

Your article was wonderful!!! Thanks so much for writing it!! We have a twin boys who are almost two and one was born with DS. We did not know until our son was 2.5 months and we had a great experience!! I was glad it happened that way!! Our whole family had a chance to fall in love with him just the way he was without any labels!!! We are truly blessed!! We are pregnant again and declined testing as I want the same experience I have had with all my children, I want to fall in love with them just the way they are!!!

If you ever want to see a place where young children (birth to age 6) with Down’s thrive just as wonderfully as their typically developing peers please come visit Rise in Tuscaloosa Al (or you can search Rise of Tuscaloosa online)! We have 100 students- half typical and half special needs and all of them thrive! Our special needs children get the services they need (OT and PT) but they also get to see there is nothing they can’t do right alongside their other friends. All our children get speech and music therapy and our typical children grow up being compassionate, loving and accepting of children who may look or do things differently than them. I’m blessed to get to work with these children every day as one of the nurses and teachers aide. I wish there were more programs out there like ours to show parents a special needs diagnosis is not the end of the world but only the beginning. Our motto at Rise is where special kids shine and that’s what they do. They shine so brightly that they can’t help but put a smile on the faces of anyone who enters our building! Congrats and thanks for writing this. It was great to read

Thank you a thousand times over for this! I am a student midwife with a passion for treating the entire emotional, spiritual and physical well-being of families. I have had the good fortune of working with some brilliant individuals with Down’s Syndrome in my 20s, so I already know what a joy a child with DS can be to their family and loved ones. I have thought so much about the question of “how would I tell a family that something is different about their baby”… and you’ve done more to answer that question than any textbook or “protocol” could ever do. I’m sharing this with everybody I know who works with birthing families. Thank you!

Thank you for words – they were right on. We too love our daughter exactly as she is and would not ever want to take away the extra chromosome. I hope that this message gets to those who need it most and that the abortion rate declines. Thanks for taking the time to write this.

Sara and Derrik – proud parents of Carly who is 3 years old and who experiences Down syndrome.

You nailed it Rick!!! Let those who KNOW what they are talking about with DS help, not the medical “professionals.” Every OB/GYN needs to have resources available right away!!!

I remember wanting to jump across the table and beat the snot out of that doctor. He was cold, rash, and uncaring. We were 18 weeks into our pregnancy. Then he said, “Your child has a 60% to survive.”

REALLY??!!!

“Come here, let me introduce you to my fist. You guys will get along.” That doctor was setting us up to abort. He asked what we wanted to do next. I looked at him puzzled at the question. Then I realized what he was asking.

This is an epidemic folks. We are allowing the “professionals” influence our vulnerable decisions. 92% has got to be stopped. PREACH IT BROTHER!!

One thing I would add to the list is: tell the parents in person, not over the phone. I knew I was at an increased risk due to maternal age and my blood work confirmed it. Because of other health issues, I needed to be cared for by a perinatologist. Had an ultrasound at our first visit and he saw some physical markers for T21. We went ahead with the amnio. The genetics counselor called me with the results. I found out over the phone. It was terrible.

Now we have a beautiful, ornery, and brilliant 18 month old daughter with T21 who lights up our days.

I just wanted to say you are an AWESOME DAD!!! While my two children don’t have Down Syndrome, I wanted to share another example of doctors’ arrogance. I am type I diabetic so obviously pregnancies are/were going to be complicated. I had just begun seeing a new endocrinologist with the bedside manner of Satan himself, when I found out I was FINALLY expecting my first miracle. The first thing he said as he entered the exam room armed with the knowledge of my impending doom (that’s what he made me feel like) was “well congratulations, I guess” in a VERY VERY negative tone. Absolutely unprofessional, uncaring and uncalled for. My diabetes was under EXCELLENT control and even though both pregnancies were rough towards the end and scary at times, both babies and I were PERFECTLY FINE. The point of this is I can in a way understand what you all went through and I wish that doctors would at least attempt some positivity toward an already terrified parent/parents, family, friends, etc. God bless you for taking a stand and for loving your son no matter what!!! 🙂

Wow, that’s awesome! Thanks so much for sharing your photo. Where in Japan are you guys from? I spent a week in Tokyo once, and one of my best friends lives is about to move to Tokyo to help start a church!

Please don’t assume that all parents of children with Down Syndrome would agree with how a doctor should deliver the news. My wife and I were expecting and excited for the pregnancy. After testing we discovered our daughter had T21, heart, brain, and intestinal deformities. Our doctor never said “I’m sorry” as there was nothing that he had done that was wrong.

We were offered both families and resources for raising a child with special needs and we were also given information if we decided not to continue the pregnancy. Our ob was pretty neutral as he understood it was our singular choice. He did explain that my wife was at a higher risk of miscarriage and due to the severity of defects our daughter might not survive until term.

Yes. It is true that there has never been a better time for a child to be born with medical issues that might have not have survived in the past. But the opposite is there are times when the medical intervention prolongs suffering.

I know this because we had access to families of T21 children who both lived and died and talked – at length – of their experiences. We made the difficult decision to terminate our pregnancy since the risk to my wife’s health was high.

We mourn our child’s loss, and I consider myself like you a father of a Down’s syndrome child. Terminating doesn’t erase your child or the love. But I appreciated our doctor being quite realistic about the choices available to us.

To the author, the word “murder” has no place in describing the difficult decision that many loving parents make for the best interest of their families. It is unspeakably insensitive to use it in this context.

I suggest reading some of the stories found at the “A Heartbreaking Choice” site to broaden your perspective.

Hello Everybody! As a parent of a 32 year old young man that was born with DS I whole heartedly agree with the above comments. I’m grateful I didn’t know I was expecting a baby with DS when I was only 26 as I may have been afraid of the unknown and worried throughout the whole pregnancy about heart defects and the unknown future with a child with a developmental delay. As it is, my son Graham is the light of my life!! I am so blessed to have him and I’m so glad that he is my son! He gives me so much joy and happiness that greatly outweighs any negative experiences!! He has made me a better person and I am grateful to have been blessed with him and given this amazing experience!! Wendy:)

Thank you for posting this. Beautifully said. Growing up my Mom was a teacher’s aid in the special needs classroom at the middle shcool of our town in Texas. I used to volunteer there on my time off. They had a couple kids with downs, a few autistic, one with FAS and a couple others with stuff I don’t remember. Each one of those children was special and unique and helped me to realize that life is what you make it, not what other people tell you it is. I am also the Aunt to a little 6 year old boy with Down syndrome whom I love very much. He is SO full of life and love and I feel very privileged to know him and be a part of his life. I can’t believe the doctor acted that way towards you and your wife and son! And I had no idea that the abortion rate for fetuses with downs was so high. That is incredibly sad that doctors would lead parents down these misleading paths to end up in that place.

I just wanted to thank you from the bottom of my heart. You see, when my granddaughter was born, I found myself online researching at 2 in the morning because I couldn’t sleep. I just happened to find your site. Actually, I firmly believe that your site found me. Your story is as if it was written for us. You were the one that gave me hope that night. Your encouraging words and positive attitude were what we needed to hear from the doctor, but that wasn’t the case at all. After 7 hours of NO news at all – she wasn’t even examined for a couple of hours after birth until a nurse came into the room and mentioned that she was worried about her oxygen levels and whisked her away). My son and daughter-in-law were left wondering what was going on. No one gave ANY information at all. This was one of the worse things about this experience. How dare they play with their feelings this way? I happened to be in the room when the Pediatric Cardiologist gave the news. It was because she had a small hole in her heart that he was the “chosen” one to give the news. His bedside manner was atrocious and it’s one of those camera flash moments that I’ll never forget. To see my son and daughter-in-law in such anguish and shock, not necessarily because of the diagnosis, but because of the way it was delivered. All the doctor cared about was delivering his speech about being the head of cardiology, been there for 20+ years, and his blah blah blah credentials. I just wanted to take them all away from that place and make everything right again. I left that hospital knowing in my heart that my precious little granddaughter would be loved unconditionally from her family and friends, but having so many questions in my head. I made it my mission that night to go home and gather as much information as possible (factual information, not rumors and hearsay) and you provided just that. Today she is a happy, healthy little 6 month old now and I am so blessed to have her in my life. Sorry this is so long, but I just wanted you to know that you made a huge difference in my life that night. Thank you!

Loved this comment it literally sounded like how we found out looked back up at one point to see if my own mother n law wrote this lol.
So I’ll share my story of When my one and only son Bentley Paul which is 3 now was born. He was born at 8:06am and after I had him they left him with us for almost 5 hours an then took him for a bath an kept him for about another 4 hours or longer I fell asleep an no nurses ever came back so when I woke up I was like okay when are they gonna bring him back so My husband and I got up an walked to the nursery to see him an he had a oxygen thing over his head an I wanted to know what was going on an now I remember them being like that’s the baby’s parents they told me he wasn’t breathing right an they had to take him to a bigger hospital an I was like okay whatever I’m going too so while they were releasing me from that hospital about to leave the doctor came up an said “And don’t be surprised if they check him for Down syndrome”
So that was how we got told first an of course had a bunch of test after but he’s the best, most happiest, sweet LIFE that was giving to me and my husband!

Hi, I felt that some of the points you made were valid, certainly offering an expectant or new mother who isn’t showing signs of depression antidepressants is bizarre. I just have one question for you; why do you always put termination of pregnancy in inverted commas’? Do you think there should be another description for the termination of a pregnancy?

People use the word “terminate the pregnancy” as sort of a rhetorical play on words. What they really mean is “murder the baby in your womb.”

No one ever says that since it really puts into focus what is going on. The word “terminate” is used to “soften” the blow of what is really going on. It’s skating around the truth of the matter, which is that that baby in the womb is fully human and wants to live just like every other person.

I respectfully ask you to reconsider your position on the idea that terminating a pregnancy is the the same as murdering a child in the womb. If anything, that harsh attitude may unwittingly drive people towards a decision they may feel conflicted about.

You make them feel reluctant to ask about what it’s like to have someone with Down’s syndrome. That their considering it is shameful and wrong.

We terminated for T21, and I feel much sorrow but not guilt. Our daughter had an extra chromosome, yes, but she also had massive organ abnormalities. Her mother’s health was at risk and it was unlikely she would have survived.

We came to our decision because of our own medical reality. Just like no one child that has Down’s syndrome is like another child, each pregnancy is unique.

If she had only chromosome issues by not organ issues, it might have been a different story for us. I don’t know. You don’t know either.

For others that may be making their choices when they get a pre-natal diagnosis, there are many ways to accept it. I wanted to mention our ob also offered us resources for adoption, although the risks to my wife made that untenable.

One thing that helped us was meeting a mother and father of a child who had passed at 18 months. Their daughter had seizures, strokes, multiple surgeries, in addition to her chromosome addition. They were frank about the joy she brought into their life and spoke broadly about their feelings that they often thought ending the pregnancy would have been a blessing to their daughter.

This is not to say that all cases are this way or that every child will go through what they did. But for all of the smiles and light, there is pain. Real pain that some children go through. As parents, we weighed all of this carefully. And with love. There was no murder. My wife was the mother of a child with Down’s syndrome. I pray that you find within yourself the compassion you seek for your little one.

First, I want to say that Jesus can provide you and your wife with healing for any past choice that you have made. I know of countless stories of women who have had an abortion who have found healing in Christ. Here’s one such story (http://www.watermark.org/blog/forgiven-and-free/)

With that being said, abortion is murder. Always. We are unwillingly taking the life of another person, and that is murder. That little baby in the womb was a person whose life was taken from him or her. Again, I know that is hurtful and that that decision that your family made brings with much sorrow, as you said. Murder (abortion) is a always, as you mentioned, sorrowful.

You said “…If she had only chromosome issues by not organ issues, it might have been a different story for us. I don’t know.”

This sounds like you aborted her due to the fast that she had organ issues, and the tragic thing is you (and many parents) never gave him / her a chance to see what those “organ issues” were.

Also this comment, “One thing that helped us was meeting a mother and father of a child who had passed at 18 months. Their daughter had seizures, strokes, multiple surgeries, in addition to her chromosome addition. They were frank about the joy she brought into their life and spoke broadly about their feelings that they often thought ending the pregnancy would have been a blessing to their daughter…” is heart breaking.

Murdering their daughter certainly wouldn’t have “blessed” her. Abortion (murder of young children) never solves any problem or blesses anyone. As I mentioned, abortion always brings with it a host of many more problems that often stay with people all the days of their life.

I’m sorry if the language I’m using is coming across “harsh” or “insensitive”…but it’s the truth, and helping people understand truth is always the most loving thing you can do for someone.

I know the decision you and your family made wasn’t easy, but we can’t call an evil thing (abortion) good, that is never ok. But I hope you know that God can forgive you for any choice you made, and can bring healing and joy in ways you can’t imagine with it as well.

I just prayed for you and your wife. I hope that you meet the One who can take away that sorrow and turn it into joy.

Dear Rick
As a committed Christian I understand your viewpoint., But I found your above comments very condemnatory and harsh. Soren and his wife made their decision as they felt it right for the unborn child and the mother. You really have no right to be so critical of them. You have made your choice. You also say that you wouldn’t have it any other way. I find that a little unbelievable, surely no parent would choose to have a child who would face a life time of difficulties, I surely wouldn’t, although I don’t doubt that you love your son deeply, And to be so critical of medics and others who voice their sorrow is a bit foolish. If you don’t feel any small sense of sorrow then I suggest you are unusual or like some folk I know , are living with denial.

Rick your response to Soren IS harsh and insensitive. Please could you not be so condemnatory. You made your choice based on the information available to you, Soren and his wife did the same, you just came to different conclusions. As a committed Christian I feel uncomfortable with your unkind attitude to someone who doesn’t agree with you.

Wait…
So are you suggesting that this mother was wrong in saving her own life?
Are you suggesting that once a human woman (read: a human YOU will never be) conceives, she is now nothing but a vessel?

Convenient, surely, that you won’t ever be in that place.

I respect your love for your child and your ability to care for him, but the idea that you can proclaim that a woman doesn’t have the right to care for her own life while claiming the sanctity of life is pretty hypocritical.

I have been reading through the comments left by you, Rick, and Lily, and my heart is breaking for you and your wife. I can relate with you as can many other parents whose kids are Downs.

We were told that our daughter had a heart abnormality and could “possibly” need a heart transplant. We were also told that our daughter could “possibly” not survive the pregnancy. My wife was also told that her pregnancy would be a high risk pregnancy. With all of that, we didn’t once consider the option of aborting. This was God’s gift to us, A BABY. With all the conditions and circumstances, Fayth was a GIFT to us, whether she lived or died. We were determined that we would cherish that gift for however long that we could.

I am sorry to say, but truth is truth. The 92% is an epidemic. I have written on this stat before as well and it is so distrubing to me. Many have aborted “possible” Down syndrome babies. Yes, just the possibility. As great as ultrasounds are today, 3D and all, nothing is for certain.

The problem that I have is that Satan has influenced us to think that we are in CONTROL. Mankind has been trying to control their lives ever since Adam and Eve first sinned. When parents abort their “possible” Down syndrome child, it is an act of taking control. I pray that you can release that. It is much more freeing to release the control and give to Jesus. I personally live a life that is not my own, but all is given to God, good and bad. And this is all possible through Jesus Christ.

The “termination,” “letting go,” “releasing,” and “murder” is all saying the same truth. A HUMAN LIFE WAS TAKEN. Some terms are softer and others are harsher, but they all are saying the same thing. I, like Rick, pray that you find forgiveness through Jesus Christ. You will find freedom from your sorrow.

My prayer is that ALL “possible” Down syndrome parents come to understand the gift in their baby, PERIOD. When the doctors list ALL the complications, I pray that parents are not focused on the “hard life” that is ahead of them, but the blessings that will proceed their life with a DS baby or any baby.

Caroline God isn’t scary, ignorant or bigoted, He is LOVE. He gave His beloved Son to bring anyone who wishes, into a relationship with Him. Sadly some of His followers are. They don’t mean to be though, so forgive them; but Don’t please judge God by His frail followers. Get to know Him for yourself,

Jared Burkley I am surprised at your comments. They are not at all gentle or Christlike, but like Rick’s, full of spoken and unspoken condemnation. To tell Soren that he needs forgiveness really is unacceptable. Do you imagine that any would be parent who is a Christian would take such a decision lightly? Please do think more carefully before you criticise those who take a different path to yourself. The one thing that I find a little hard to understand is that some people on this page almost gloat about their DS children. I don’t doubt that the children are much loved as they should be, but to make the suggestion (implied) that it is some sort of reward is absurd. Reminds me of the parents who wanted to have their embryo screened to ensure that the child was born deaf just like them, how selfish is that! Please don’t condemn those who feel unable, for whatever reson, to bring a handicapped child into the world. (You will complain about the use of that word of course, but that is the truth however much you deny it) Just show some compassion please.

I understood were you were coming from in this comment until the end. The same compassion you’d like pro-lifers to show those who decided to terminate is the same compassion I, a mother who decided to keep her child, would like you to show me. And not that I want you to pity me. I’d like it if you’d stop saying that my decision to bring my child (a very happy and healthy little girl with Down syndrome) into the world as selfish.

Everyone, at some point in their life, becomes “handicapped”. It can happen gradually or all of a sudden and we’re always surprised by it. At some point we will all need someone to take care of us. Whether it is at the end of our life or at the beginning. In fact I suffered a debilitating back injury at 32. I thought I’d be in a wheel chair for the rest of my life. We’re all here as a human race. It’s important for us to care for each other because all humans have worth. And able-bodied does not necessarily mean “happy.” I’m sure you can think of at least a dozen people with so called “perfect lives” who have suffered or are suffering deeply. We all have joys as well as tragedies, whether we have 3 21st chromosomes or not.

Let’s all have compassion for each other, in general. I’m sure your intentions with this comment were good and you were sticking up for someone, but I’m sad to think that people think my daughter’s life would be better had she never been born.

When we met with a family while weighing to terminate or not, the father told me privately there is a strain of bullying in the Down’s syndrome community that you have to be vigilant against. It looks like it is advocacy, but it is bullying at its core.

Rick, you do not get to call my wife a murderer. You do not have the right to say we killed our daughter. You do not get to speak for what is correct or incorrect in another’s life and if you were Christian, as others have said, you would have shown compassion. Unfortunately, it is clear what type of character you have. I don’t want this to be negative, but I do want others – particularly fathers – who are parents of Down’s syndrome children to weigh.

I am the father of a child with Down’s, and the fact that she is not alive makes me no less a father or her no less a person. Our termination has no bearing on any one else’s child, does not damage the perception of disability or make us anything other than caring parents. Our daughter was probably going to die, if she made it to term at all.

Whether you can admit to yourself or not, T21 is a problematic chromosomal combination. After tests, it seemed that the risk to my wife was simply too high. You claim that you are religious, but you are speaking with a wicked tongue. You are putting hate into the world by your stance that termination is always wrong. It is not. Just as taking someone off of life support, there are medical circumstances that require medical intervention. The fact that you would prohibit a family from making the best choice for their family is gruesome at best and evil at worst. You clearly don’t understand the depth of what life and death are. And what suffering means.

In a way, this somewhat random interaction has inspired me. I think it’s important for the father of down’s kids, like I am, to take a stand against your strain of bullying. If anything, it is your cold heartedness and the types of people like you that is causing my wife to grieve even more because she can’t do it openly. She has judgmental people in her family and can’t speak about the depth of her love and the scope of her loss because they turn into the “murderer” robots like you have.

I see now I have to be louder and braver for my wife, but most importantly, my daughter. My daughter was dying and there was nothing we could do but give her peace. But there are so few places where men have told their story of losing a child pre-natally that I see I must lift my voice against your cruelty. The parents who lost their child spoke about how the label of murderer made them go against their own instinct. That the disability “chatter” drove them to a decision they now regret.

When their kid was sick, there was a chance for them to continue to do medical intervention. They didn’t want to give up on their child, and so it was shock after shock, tube after tube. Have you seen a baby swollen with a distended stomach from fluid? Have you watched a child gasp with fluid in its lungs or around its heart? We watched video of their child who was very ill.

Indeed, the reason we were put in touch with them was the type of problems our daughter had were pretty similar to this couple’s. I will never regret sparing my child that. The couple regrets prolonging the life because in the end it became unbearable. If there is mercy from God, perhaps you should spend time and think that God’s version of mercy is likely different than what you think it is.

You are blinded by your own investment in your child – which is natural – it’s what every parent does. But to lash out at other’s is deeply puzzling.

I understood Ricks point to be that “termination” was a euphemism for the conscious act of taking the life of another human being. There are many different words in contemporary use for this act.

The conscious act of taking the life of another human being is inconsistent with almost all spiritual traditions including Christianity. So, that becomes a truth that needs reinforcing in our current culture. Once a life has been taken, then the necessary response is one of compassion. That is to say, the act is condemned, but not the person carrying out the act, who will live with the consequences of any action may under free-will.

From a theological perspective a conscious act of ending another’s life is very different that allowing a life to pass naturally. This is why some choose perinatal care. And I know many families who were told by Doctors that their unborn children had conditions that were “incompatible with life” that have gone on to have perfectly good lives.

I pray that you realize, Rick, how much more Christ-like Soren is than you make yourself appear to be.

You called this man’s wife a murderer, and he responded to you with nothing but grace. And yet you continue to accost him.

I want nothing to do with the God that you follow, Rick. You are everything that is wrong with Christianity today. I am deeply saddened that I have encountered yet another example of why I no longer have faith in the “Church” today.

I came to this site to read the stories and experiences of parents who are raising or have had children with DS. I did not come here to debate abortion issues or further any personal agenda I may have based on my beliefs. Soren your story moves me and I find it incredibly sad that you lost your child. Rick when I first started reading I felt an enormous amount of hope and joy in the posts until you crossed the line from informer to reformer. Please everyone quit tearing at each other and get back to the reason for these posts….supporting each other. You do not have to agree with an individual’s choices or decisions but you must agree that that individual has the right to make them. You are doing a dis-service to everyone by assuming that you are the only one here that is “right”. I need information and personal experiences right now not opinions and attitudes.

Erin, I don’t think Lily was implying that it is selfish to bring a child with a disability into the world. I think she was saying 1) that trying to *make sure* that your child has a disability is selfish; and 2) that some people do not feel they can handle raising a child with a disability and it’s not right to judge them for that.

My wife and I found out our little one had Down Syndrome about halfway through the pregnancy, and around the same time discovered that she would need surgery after she was born. We had a *choice* as to how to proceed, and we *chose* our child. And a part of that choice was a promise to her that we would fight for her no matter what. Our little girl is nearly six months old and has never left the hospital – she is going in for her major surgery in less than a week. It has not been easy. But I don’t regret our decision for a minute. But I also can’t judge somebody else for not being able to make the same choice. You may feel that abortion is murder in principle, but I think most people are rational enough to understand that there is a pretty big distinction between the two in practice – after all, I don’t see anybody lobbying for incarceration for women who obtain abortions. Even most pro-lifers have to concede that there is something that doesn’t feel right about locking up a woman for aborting her pregnancy, even while they push for punishment of the doctors who perform the procedures.

Soren, I am so sorry for your loss. It must have been heartbreaking to have to make that choice, but I know you did what you felt was best for your wife *and* for your child and that is all anyone can do.

The best solution is to help educate all people, which is what we’re dedicated to on this site. We want all people, everywhere to see the value of human life, and that all life is worthy of life. Our prayer is the more people that follow our story and see our son (and the thousands of other family’s who share pictures and tell their story) the more people will see that having a child with Down syndrome isn’t nearly as ‘scary’ as many doctors make it out to be.

I agree that education is the best solution. But I don’t think it helps anybody to call somebody a murderer. You might feel that way, but other people have legitimate reasons for seeing it differently. Your religion is not the only one that addresses abortion and my religion (Judaism), for example, sees it very differently. When you start calling people murderers you’re a step short of telling them they’re going to hell and that doesn’t help anybody – nor does name-calling, and nor does attacking somebody when they’ve just shared what is obviously a very painful experience regarding the loss of a child. If you don’t agree with their decision, fine, but it’s their decision, not yours, and calling somebody a murderer *is* passing judgment.

In any event, the way you convince people not to abort because of a Down Syndrome diagnosis is NOT by telling them “Don’t murder your child, don’t become a murderer,” etc. That will not work, it alienates people, and it’s an instant judgment. It makes you a bully. Education means we tell them, “Don’t be afraid of your child.” It means we tell them, “I understand your concerns – here’s what I can tell you that might address them.” And then you tell them some of the things you talked about above – about how a Down Syndrome diagnosis doesn’t mean the same thing today that it did 50 years ago. How these kids can live happy, productive lives and how they have a tendency to enrich the lives of the people who are touched by them. How yes, they can have medical problems, but that doesn’t automatically mean they will, and even if they do, many of the medical problems can be addressed surgically.

Can we just focus on our beautiful kids and keep the bullying and judgment to a minimum?

Thanks for your comment. I’m not sure how long you’ve been following our site, but that is exactly why we started it; to give people a window into raising a child with Down syndrome. Check out this interview we did (www.noahsdad.com/power) and (www.noahsdad.com/press) for more info.

Also if you have been following the comment thread I was asked the question if I thought abortion was murder, which I answered. Taking the life of an innocent person, is by definition, murder. Trust me, I can understand why we would rather not use that wording, but playing rhetorical games doesn’t help anyone.

As I stated, God is bigger than abortion, murder, etc. Heck, the Apostle Paul was a murder and he wrote half the New Testament. God can bring healing to someone who has aborted their child. That’s the great thing about grace.

I am only returning to this thread because my wife showed it to me, and it comforted her to know that another mother – Lisa – understands that parents make choices for their children that Rick disagrees with, but is understand by another parent of a child with DS.

Lisa, thank you for your kindness. It’s made a hard day for my wife easier to bear. Seeing kids in costumes is hard on her.

Rick, I took a moment to read another post of yours, and that’s how you hate petechia. Rick, luckily for him, acknowledges that his son is relatively healthy. He doesn’t have heart problems. In fact, Rick is so dismissive of the illnesses that DS children have that he hates a disease. That is absurd. It’s ridiculous. Above all, his hate is a prayer that his son doesn’t suffer.

I don’t want to be an antagonist, and this blog is dedicated to his mission, but I was other DS dads who might stumble across this understand that making a hard decision for your wife and child is not murder; it is compassion, and with the multitude of anomalies in our little girl, she would have suffered. Greatly. Terribly. If she lived to term and her fetal problems didn’t overwhelm and kill my wife.

You have to ask yourself why Noah’s dad wouldn’t want to child to get sick? Wouldn’t that be part of some Almighty’s will? Wouldn’t you want to take on the suffering of those you love? Well, we did. Other parents do when they terminate. You can choose to believe it or not, but it doesn’t change the fact that you – like us – would do everything in your power not hurt your child.

Wow. There have been many comments and I regret that I have not followed along until now.

Soren, there is so much I would like to share with you on what you said, but I don’t believe that it would be beneficial to anyone.

This is my personal story. We were diagnosed that our first child would be born with DS. The doctor also shared that Fayth had a heart abnormality, she had no central wall in her heart (BIG PROBLEM). He gave her a 60% to survive the pregnancy. He was giving us all the options that might come along with having an extra 21st chromosome. The diseases, life expectancy, the drugs, the hospital visits, but he didn’t shine the light on what life could have been like. Doctors make statements as though they are facts. THEY ARE NOT!! They give us odds, like it was Vegas. I am sick of numbers and statistics that give probability.

She was born and had a stay in the NICU after birth. She wouldn’t breastfeed and trust me, my wife tried. She is a Postpartum RN and teaches new moms how to. You would think if anyone could make it happen, my wife could, but Fayth just wouldn’t breastfeed. She needed to get up to 10lbs. before they would admit her for open-heart surgery that she NEEDED. Day after day, hour after hour, we bottle fed her tirelessly when she didn’t want to eat. Every 3 hours we fed her for 1 hour (the time doctor’s time limit). It took us 30 minutes to prep the milk. Yes, 90 minutes of breaks. Tiring. They wanted to put her on a feeding tube, but we asked the doctors continually to give us a little bit more time. We want Fayth to FIGHT. We wanted to raise a FIGHTER. So we fought for her when she couldn’t fight for herself.

At 3 months, we reached 10 lbs. and we got her in to fix her heart at the earliest opportunity. I can’t begin to explain a Dad’s heart break for their daughter when they see tubes “plugged” into her body. (I don’t share the picture much because it is not pretty. I personally don’t mind sharing it because it doesn’t bother me. I am just trying to be sensitive to people’s emotions.) The swollen chest, fresh wound from the surgery, the feeding tube, the oxygen, I hated it all, but loved it all at the same time. I watched with no control my daughter when her blood pressure dropped to 36/24 for 3 hours after the surgery. No one could do anything but watch and pray.

4 years later we sit. Fayth is no longer on ANY medications. Doctors said she would need medication the rest of her life. She has not gone into another surgery, against the doctors anticipation. She lives with such passion and love. Oh yes, and she is a FIGHTER now on her own.

All this to say, these are my credentials. I am a Dad of DS daughter that has blessed our lives tremendously. Our 60% child destroyed doctor’s odds, predictions, and anticipations. We have suffered tremendously and through that suffering experienced greater JOY than we could have ever imagined before. And not because she is healthy now. It is solely because we gave Fayth up to God. Fayth is His daughter. He is the Almighty and we surrendered to that. We knew that she might die, but we lived every second to its fullest. We don’t know what the future holds, but nothing will steal our joy, EVER! We pray that there may be no suffering, but if there is, we will embrace it to its fullest.

If you don’t trust my heart. I ask that you find another Dad that has gone through the pain and agony like this and also surrendered it to God fully and see their heart. I will guess that you will have a hard time finding someone that regrets their decisions. Yes, there will allows be pain and suffering, but that doesn’t have to lead to despair and heartache.

My heart breaks for you and your wife on this day. With the kids running outside, I pray that you may have peace through Jesus Christ. Trust me, that is only TRUE source to unconditional peace.

Dear Soren
I didn’t find out anything was wrong with my now 3 year old son UNTIL he came out of my womb with 10 toes an 10 fingers an looked perfect an then finding out first he was having breathing problems ,then they told me he had an opening in his heart an had to have surgery an had Down Syndrome . An you think for one second I thought oh no just kill him doctor that’s to much to put him through! I don’t think so!! It was a fight to keep him alive at any cost! So Soren if you had not known anything was wrong with your UNborn child first An she came out THEN you seen what you were up against instead of just guessing Would you still of told your doctor to kill her? I wouldn’t think so! Or hope not at least! So I agree with rick I don’t think anyone should abort a child just because they are gonna have a disability I don’t know how you can think its okay to kill a baby in the womb cause it’s “probably” (which you used the word “Probably” a lot which sounds like a guess) gonna die? Really well how bout letting her be born first then see if she would of died or not. I’m glad my son is heathy today an living an if something horrible happened tomorrow an he died I would never regret or forget the joy an happiness he put in my soul. An I’m just sorry y’all didn’t give your precious daughter a fighting chance that really saddens me! So I don’t think you should be more loud an aggressive to tell people it’s okay to kill a baby! That was your decision an it’s your life nobody else’s! Besides your the one reading Noah’s Dad’s website so if you knew there’s so many “bully’s” like “us” why even come to his website! Since you actually didn’t want the responsibility of taking care of your daughter an this is a web site to encourage other parents that do have a big responsibility of taken care of their children with disabilities. Why do you even get on his page!

It’s actually the pediatrician who is supposed to deliver the news. The newborn is not the patient of the OB. They’re concern is the mother and getting the newborn out safely. Once the newborn is delivered the infant is turned over to the care of the nursing staff. Most times the OB won’t even look over towards the baby since its out of their scope and not under their liability. I think this letter is great for prenatal diagnoses those. It’s the national standard that the Pediatrician be the first one to deliver the news. Not the newborn nurse. Not the OB. Not the nursery staff. That’s why some parents wait hours before they are told, even though everyone working on the floor suspects it and is talking about it. This letter has great info but lots of typos and words misspelled. It would be nice to have those gone so people could pass this info on to providers.

Thank you for reminding doctors of their Hippocratic Oath. I had a prenatal diagnosis through an amnio (my first child and the ob/gyn intimidated me into having the amnio – docs are so afraid of a “wrongful life” lawsuit – we have to get the word out – there is no such thing as a “wrongful life” – attorneys see this as a big bucks med malpractice lawsuit – so we MUST stop this practice – it relates to the “standard of care” that docs must follow – or be threatened with a med mal lawsuit) I was sat down in front of the owner of the Genetics and IVF Institute and severely pressured into having an abortion – its safer than giving birth – you can try again in a few months etc etc. I did not cave. Nothing was going to stop me from giving birth – Nothing. We live in a sick society …human life is devalued every time a child is aborted…this must stop….when any life is lost…every life is at risk including yours and mine.

Another excellent post, Rick. A beautifully worded letter that I hope many health care providers see. In our case, it was the pediatrician who delivered the news. The main thing that all nurses, the OB, and the pedi told us was she is so beautiful. I do not think we were told “I am sorry”. I just got the “I am seeing signs of Down syndrome. Come here and I will show you. We also got a visit from a social worker who gave use info about the local Ds Association. Of course that social worker also asked if I wanted to give her up for adoption! I do wonder what would have been said if I had be pregnant and got the news prenatally.

Thank you so much for this post!! I wish our neonatologist had an article to read like this before he came in & told us our newborn son had Down syndrome. Very cold, impersonal & I was barely conscious!
While Ethan’s diagnosis of Ds was life altering and scary, we fell in love with him immediately & didn’t look at him as a child with Ds – we looked at him as our perfect son.
Ethan is a total, complete blessing to our family and we wouldn’t change a thing about him!
God Bless you and your family and keep up all the good work you do on your blog!

Thank you so much! Your post is very thoughtful and well stated. I wish every OBGYN was required to read it. I have a 12 year old great niece with down syndrome and her parents experienced the same things that you did from their obgyn.

Fortunately, they also received a lot of education and help and chose to carry Lanie to term. She is a delightful member of our family. She had so many resources available to her. She was reading at age 3. A lot of therapy starting at birth has given her a great boost in life.

Yes she has her issues but these do not stop her from being a fulling functioning member of society. Today she is in a regular class keeping up with her peers. We are so happy for all her experiences. She has brought so much joy and many blessings to our family.

Of course she has her differences but that is what makes her who she is. I thank the lord every day that her parents did not choose to terminate the pregnancy.

We do know that her development will stop at some point but we do not know when. We accept her for who she is. I wish more people would help get the news out there.

Thank you for what you are doing Rick. I’ll never forget the tragic way that our son’s diagnosis was delivered to us (at his birth) either. The message you are sending really needs to be received by healthcare professionals all over. After a week of crying and catastrophizing over our son’s condition, we took him to our family practitioner. Her approach was the exact opposite of the OB/GYN. I’ll never forget the way she swooned over our adorable little baby boy, looked us in the eyes, and said “it’s gonna be OK”! She went on to tell us how much love had just been added to our family, how unique and wonderful his personality would likely be. She encouraged us and assured us that we had done nothing to “cause” his Down syndrome. I remember leaving her office with tears of happy relief rolling down my cheeks. We were still scared and a little unsure what we were doing, but at least someone had congratulated us and given us hope. I hope this will be the norm for all parents receiving a Down syndrome diagnosis on the future. With your help and us other parent’s support, maybe it just will. <3

“Your baby has a little surprise” ~ love that! I feel very close to families of kids with problems, as some of ours have cystic fibrosis. Thank you for your kind, unflinching declaration of the truth of the worth and dignity of all life. It’s a mystery, to be sure.

Thank you for this article, as a Nurse-Midwife this is a topic that does come up in the work environment. What a great conversation starter this article has been for the Facebook group of nurse midwife students I am a part of. It has gotten many future CNMs thinking!!

Rick, thanks for this post. It is important as I think many medical professionals have outdated information. We have twin boys who are now 11 years old and one of them, Paul, has Down syndrome. My OB/GYN also said “I’m sorry” and I don’t think that’s necessarily the wrong thing to say. “I’m sorry” can mean, “you didn’t have the child you were expecting and I know that is a shock and it’s ok to grieve for that child” and in our case because I was having twins and had many many ultrasounds, scans, etc. that all seemed normal we were advised against having amnio (why risk it when everything seems absolutely fine?), “I’m sorry” meant “wow, why didn’t we see that earlier so we’d all be better prepared.” Our pediatrician came in and said very bluntly “we think something is wrong with Baby B” (we hadn’t figured out names yet) and beat a hasty retreat. I was alone, couldn’t get out of bed, didn’t know what the heck to think (wrong how? wrong what? and what about Baby A?). The lactation consultant probably suspected but didn’t say anything, just took him out of the room to try and feed him (and never told us that a Haberman nipple would help him learn to suck, we had to find that out on our own after a lot of worry and tears). A geneticist had to come in and make a determination and he was fabulous. Didn’t sugarcoat anything, but was positive. A nurse told my husband not to get too atttached because “they don’t live long.” To be fair, another nurse did give us a phone number of a friend who has a child with DS, and was very positive but at the time we were so overwhelmed with what we didn’t know, most of the conversation didn’t even register. The initial cardiologist wasn’t great, but we found others who were, again, fabulous and caring. We stuck with our pediatrician, who apologized at our first newborn visit, and I love him now. He actually has a lot of patients with DS and is a great cheerleader for Paul and supports us in some of the things we have done for Paul, like vitamins, cranio-sacral massage, etc. The only thing I would change in your letter, Rick, is that not every kid with Down syndrome is going to go to college, live independently, etc. Sure we all hope for that and therapies and medical interventions have made life with DS much better and much longer, but being “high functioning” is not going to be everyone’s reality, no matter how hard a parent works. The goal is to help your child be the best they can be, no matter what that turns out to be. I think that’s probably what you meant, I just think by listing all those things as an absolute reality may be misleading to some.

Rick, as a volunteer social worker/foster facilitator/orphan advocate at an orphanage in China, I have the pleasure of knowing many precious children with Down syndrome. Pressure here to abort a child with Downs is even higher than it is in the States. Thank you for your well-written, thoughtful letter on this subject. I know many doctors (including many Christian ones) who would greatly benefit from this method of sharing the news with their patients. I intend to show them this letter.

Advocating for children with Downs (including ones like Xixi, who still have no family to love them) is something I’m passionate about, because I believe Jesus is passionate about it (and about the value of life in general). Please keep up the great work!

Check this out: https://kcdsg.securednerd.com/files/content/termination%20rate.pdf. My local DSG chapter is doing a different fact about Ds every day this month, and this one made me think of your post. Still an unacceptable rate, but didn’t want you to be unknowingly basing your posts on old info, since you have so many followers.

Thanks for sharing this. The 92% abortion statistic sadly isn’t a “myth,” though I wish it were.

Here’s a link to a peer reviewed scholarly article on the topic. What makes this even worse is that there is a good chance the abortion rate is even higher now since recent medical “advancement” have made it even “easier” for a women to know if their baby has a “birth defect” which results in more abortions. Here’s the link to the article – http://www.ncbi.nlm.nih.gov/pubmed/10521836

RESULTS: Twenty-four studies were accepted. The weighted mean termination rate was 67% (range: 61%-93%) among seven population-based studies, 85% (range: 60%-90%) among nine hospital-based studies, and 50% (range: 0%-100%) among eight anomaly-based studies. Evidence suggests that termination rates have decreased in recent years. Termination rates also varied with maternal age, gestational age, and maternal race/ethnicity.
CONCLUSION:
This systematic review presents the largest synthesis of United States data on termination rates following a prenatal diagnosis of Down syndrome. Evidence suggests that termination rates are lower than noted in a previous review that was based on less contemporary studies and had an international focus. Heterogeneity across studies suggests that a summary termination rate may not be applicable to the entire US population.

Thirty three years ago, my mom’s friend (43 at the time) had blood tests done, and results showed a healthy boy and no DS. Their daughter were born with the severest DS that I ever came across. They were reeling from shock, and so were their GP. It turns out the blood sample were switched by mistake. It turns out the other mom aborted a healthy little boy. Now ask yourself, were the legalization of abortion a blessing or a curse?
Gerry

It amazes me how quick Dr’s are to suggest aborting a child. My son does not have downs, but he was born with some lung issues, when they first found it his heart was on the right instead of the left and right away they came to me telling me to talk it over with my husband. It was not even a option for us, there was nothing to consider. Had we taken his advice we would not have the pleasure to be the parents of our 5 year old little boy who is striving and living a very full life.

Thank you for this wonderfully well written, sensitive letter , there is still so much outdated information being used thank you for reminding doctors that they need to keep up to date and be sensitive towards others. Like others I was told that my daughter was a mongoloid soon after she was born. This was not meant to be insulting it was just the terminology still in use in 1974. I always feel blessed that the doctor who delivered the news was encouraging and as factual as he could be, informing us that our daughter would have a learning difficulty but that she would still have a quality of life. We were also introduced to another family who had a child with Down’s Syndrome. Sammy has lived an ordinary life doing the kind of things we all do and now does voluntary work in a cattery 3 days a week. (we live in England)

I love this post! I have a 6 year girl with DS and I found out my blood test results over the phone at work. I was scared and decided to have the amnio. Two days following the amnio I received yet again another call at work from my OB with the results as well as prompting me to make a decision quickly. I really like my OB but the way the news was delivered was awful! Thank God my hubby kept me grounded and I now have the most precious gift, my daughter Lily. Love her to pieces!!! I do have to add that my OB called me a few years back to ask me if she could give my number to another mom in case she needed to talk. So my experience had an impact on her. 🙂

We are the proud parents of a 15 year old son with DS. When he was born the news could not have been delivered in a more inept manner. Give him up, leave him here today, he will be capable of little more than giving and receiving love, etc.

Chase has gone on to play several sports, sing solos in front of large crowds at school talent shows and last year was inducted into the National Junior Honor Society.

It has not always been easy but it has definitely been worth it. He has made me into the person I wanted to be.

This letter was PERFECT! Thanks for sharing. I hope the medical field takes notice.

Dear Rick, this is one of the very best articles on HOW TO DELIVER A DOWN SYNDROME DIAGNOSIS THE RIGHT WAY. I was raised in the United States and moved to Honduras, Central America 20 years ago to marry my husband and moved here to live in Honduras. Our only daughter Kristina born with DS led us to starting the DOWN SYNDROME FOUNDATION (integrar fundation) a non profit organization that is now over 15 yrs. old. I would very much like to know weather someone has translated your article into SPANISH already, as to not duplicate efforts and IF SO, would very much like a copy to share with all the Medical society and hospitals, since the majority of the stories of the parents are heartbreaking and much too hurtful to express in this society that is laking of profesionalism in many senses. I encourge you to Pls. visit our web page at: http://www.fundacionintegrarhn.org THANKING YOU AGAIN FOR THE BEST ARTICLE EVER, LUCY MORA DE KAWAS

I came across your blog today (actually found you on FB). I wish all parents could have the experience my husband and I had when receiving the news that our son had Down Syndrome at his birth just over 11 years ago. My OB/GYN came to me with a tear in his eyes and said “we suspect that your baby has Down Syndrome. I think you are the perfect mother for me.” It was so wonderful. I was never afraid until I learned all the other health complications that come along with it. (not sure if you will even see this, but thanks for putting a positive message out there about our great kiddos.)

What a wonderful lesson to teach the whole OB/GYN “staff”. My husband and I received mixed “reviews” when our son Nick was born. I couldn’t believe that we were offered “options” (ie adoption). We were only in the doctor’s office for “helpful” information. I remember my husband interrupting the doctor (which HE NEVER does) to say Nick is our son and we are taking him home I will never forget my husband saying that 🙂 Our son Nick is now 24 and we would never change a day in our lives. I also believe my two other sons (23 and 19) would say the same thing. Nick is just Nick in our house 🙂

I can’t thank you enough for posting this information, not only is it helpful for doctors but for those that hear you had a baby and share the sentiment of “I’m sorry” …like your story, we too received these words from an OB/GYN plus …”you’re going to hate me for a long time after I give you this news” …I’ll never forget those words. Our son Benjamin is now a thriving 9 year old little boy who rides horses, swims, skis, is beginning to read, write, learning numbers and a joy to all who meet him! Having a child with down syndrome is challenging but so rewarding and everyday our Benjamin changes the world for someone in a better way!

I cried all the way through this post. None of my children has DS. However, all three of my living children have a genetic defect that went undetected until they were here – and we, too, heard “I’m sorry” and “If only we’d known” from our geneticist once we figured out the problem. Our lives have been full of tube-feeding and various and sundry therapies and hospital visits/lengthy hospital stays and friends and family quietly asking us if we’d have chosen a different path if we’d known. My answer is always an emphatic “absolutely not!”. Our children had a rough go in the beginning of their lives…but now, by the grace of God, they are thriving.
That baby with the genetic “defect” in the womb is every bit as human as the genetically “normal” baby who may, God forbid, present with autism or cancer or some other issue when s/he’s older.
My point is that nobody knows God’s will. Life is not perfect. Everybody deserves a chance to live and none of us can predict the future.
God bless you for posting this.

Here via Love That Max. This is a great post. I know that my parents di prenatal testing for spina bifida when my mother was pregnant, and she said the automatic assumption is the mother will terminat eif the fetus has the condition they’re tested for. Now I for oen am not against abortion, but it shoudl Always be the parents’ choice. I like your suggestion of connecting the family with another family with a Down Syndrome child.

Thanks for your comments and for the kind words on the post. I’m a huge fan of choice myself….but everyone’s choice…meaning the life of the baby in the womb. I’m not a fan of taking someones life who may not want to die…if that makes sense.

This is extremely well written. You are 100% correct in that doctors generally mishandle delivering “the news” properly. When my husband and I were given the news, a very cold and indifferent doctor came in and told us and then exited the room. He couldn’t have gotten out of there fast enough. Then it was all down hill from there. I think that was a shame. A lot of our joy was stolen because we dealt with people like this over and over again.
I wish I knew then, what I knew now. I would have enjoyed my little baby more and not been riddled with fear of the unknown..

If I were pregnant I would want to do every test possible to determine the health chances of my child. I would then make decisions based on those chances. I believe that these doctors are just trying to help. There is nothing wrong about abortion- regardless of the reason! It’s the mother’s choice.

Thanks for your letter. If I would have listened to my pediatrian 42 yrs. ago, our lives would have been forever deprived of the most wonderful love. Unfortunately, I used him for another year as I observed him treating her with emotional detachment. He was always great with our “typical older kids”. I was so angry when I finally had enough, but looking bad I see how he was the loser, not us.

Good Article Rick. I have a 19 year old daughter with Rett’s syndrome and she isn’t vocal and can’t take care of her basic needs the way most can, but she has taught me to speak her language, one where her eyes light up when she is happy and kisses me when she needs something. I 100 percent absolutely positively never regretted any day of her life.

Of course me and my wife mourned at first and that is the best part of this article for me, I had made up an imaginary child and she wasn’t born, but once I got to know the child I was given I changed my expectations and buckled up for the wild ride raising her has been.

Our Pediatrician was the one who told us she was going to be profoundly disabled, the worst part about it he gave us the news by saying “your daughter is retarted and you just have to get used to it”. So we fired him, found one that saw life the way we saw life, valuable no matter what.

I find a kinship with parents of disabled children/adults, because I know we understand the complexities of life a little bit better than others, no matter how minor or major the disability.

Wow… This story is so close to mine, it’s crazy! 18 n scared, I was treated so badly after my daughter Brianna was born. Just cause I was young doesn’t mean I was stupid.. I got the “I’m sorry ” and many “because your child’s not born normal” line.. from a nurse seconds after she was born. I was even advised that because I was young and single, that an adoption agency could also be an option. Wish I had the nerve to speak my mind back than.
Brianna is going to be a senior this coming school year, n has been an inspiration to her brother n sister. Never does a day go by, that I regret ignoring that one nurses negative words. She is an amazing young lady, and I am blessed everyday that I get to be HER mommy….Way to go Noah’s dad…!!!
Proud momma of Brianna !!

I adopted my three year old son when he was two days old. The pediatrician that had cared for him while he was in the nursery had asked to speak to me before I brought him home. She told me he was very healthy but there were some concerns of fetal alcohol syndrome. She asked me if I had any concerns and I asked her if he had Down Syndrome. She said there was a possibility but because he is Alaska Native the trademark facial features were not good determining factors. At that time she asked of that would sway my decision in any way. The first time I held my son he looked me in my eyes and I knew then we belonged together. I feel so blessed to have been given the opportunity to be a part of Quentyn’s life. If I had to do it all over again I would do the exact same thing!
One thing I would like to add, many parents are given the diagnosis of Down Syndrome prenatally and some choose to terminate. Unfortunately, children with Turners Syndrome have the same features as children with Down Syndrome but they are in no way intellectually challenged as children with Down Syndrome are. Not that I agree with terminating a pregnancy just because a child may not be what we dreamed of.

Thank you so much for this letter. I’ve shared it with my cohort in Second Year Medicine at my Australian university. Hopefully now there’s at least some of the next generation of doctors who will have greater sensitivity and awareness when talking to parents about Down Syndrome.

When he was born in 1952, the doctor told my mom to just feed him and keep him comfortable, but not to get attached to him because he wouldn’t live to see 7. Well, he’s 61 and outlived our mom by many years. He has Alzheimer’s now, and he lives with my husband and me. Before this, though, he lived in an independent living situation, got himself up and to the bus on time, and did his work at a sheltered workshop. He had the very best sense of humor, and he loved everyone. We’re losing that part of him now, but the memory of this precious one that God let into our family will always be wonderful. I tell every mom I see with a Down’s baby that I wonder what she did to deserve one of these special ones. Not everybody gets to have one, you know. He’s a joy, this brother of mine, and we’ll miss him when he’s gone.

I am a special education teacher and coach a special needs cheer squad in the dfw area and also had a brother who had downs syndrome. I have been working with special needs children and adults for almost 20 years. My downs kids and adults are some of the best, most memorable students, cheerleaders and residents that I have had the pleasure to work with. They are full of life and can make any day into a great day just by being themselves. Thank you for writing this letter and for all of the work you are doing. It truly is bringing awareness and attention to how wonderful people with downs syndrome can be.

Almost 3 years ago our son was born with Down Syndrome. One bad thing that I remember, after they took the baby to check him out and I was still in the delivery room, is that somebody from the hospital asked me “Do you want to give him in adoption?”. “No. I don’t. What would I do that?”
Sometimes hospital people forget they are caring for people, and I understand that is a stressful job, but there is a limit of things that can be said to anybody.
Our son is healthy and happy, we are too.
Thank you for your post and for sharing moments of your family. Estef.

i delivered my son Nov 1980 when there were no routine tests to check for DS.
I didn’t know anything until the next morning when my doctor walked in and said we think your son is Mongoloid. Said he was sorry and just walked out. My nurse immediately came in and stayed with me until my husband arrived.
I had no idea what was ahead. They told me I had choices- adoption, institute or take him home. I told my husband what they said and we never discussed it again. We brought him home, fell In love with him and never looked back.

Loved reading through your post! I am 25 years old and my son just turned 1. During the early part of my pregnancy our doctor saw something disturbing with an ultrasound. The fluid on the back of my child’s neck was larger than it was supposed to be. We were concerned and the doctor convinced us to do some blood tests to check for some various syndromes, etc. we obliged. A week or so later. We got a phone call telling us that our child has a 1 in 13 chance of having Down syndrome. For my age my numbers should have been 1 in 4000.

At a later appointment our doctor asked if we wanted to do more testing. Th testing increased our risks of miscarriage. After much discussion and reassurance to my husband we decided to not do any testing. We would never have an abortion and so we would just wait until birth to truly find out.

At birth our child was born without Down syndrome but the reality is it could still affect our current pregnancy. Our second child will be born in May 2015. No. Matter what we will love him and her to pieces!

Amen!! My daughter is the most amazing gift and joy I could have received and I found it insulting how it was immediately offered to me to end her life and like I was being given a death sentence. If I had a redo, I’d jump up and down yelling woo hoo in the doctor’s office just like my daughter does when I pick her up from kindergarten and she asks if we’re going to mommy’s house and I say yes. Best gift ever!!!

Thanks Rick, My granddaughter was born with DS and I was there for her birth, the Dr. said “I’m Sorry but your daughter has DS” My daughter and her husband was shocked as you would think cause they knew nothing about this, prenatal nothing…I looked at them and said ” she is beautiful and we are going to Love her like no tomorrow.” She has brought so much joy to our lives and is such a sweet child…I agree with your message 100%. Her name is Arlynn:

Thanks Rick, My granddaughter was born with DS and I was there for her birth, the Dr. said “I’m Sorry but your daughter has DS” My daughter and her husband was shocked as you would think cause they knew nothing about this, prenatal nothing…I looked at them and said ” she is beautiful and we are going to Love her like no tomorrow.” She has brought so much joy to our lives and is such a sweet child…I agree with your message 100%. Her name is Arlynn: I tried to post her pic, but, it didn’t work, She is 3 now and such a sunshine!

Because I am a member of The Church Jesus Christ of Latter Day Saints (aka The Mormons), I know that these children are special spirits who did not have to be tested on this earth. When I am in the presence of a child with Down’s Syndrome or any child with mental disabilities, I know I am in the presence of greatness. They will be privileged to have all of the blessing they did not have in THIS life given to them during the millenium, where they will have perfect bodies and minds.

Rick,
What a beautiful article!!!! Thank you for bringing attention to this matter!! I definitely count you as one of the pioneers in helping to spread the message of embracing different and killing the association of negativity with birth abnormalities and Down Syndrome. I actually don’t like the term birth defect and certainly don’t consider DS among other things a ‘birth defect.’ I follow your series on YouTube and always especially enjoy videos showing Noah’s milestones in therapy, etc.
I’m in the process of becoming eligible to adopt a child/children with DS and could not be more excited about what I consider to be the most humbling & rewarding experience of my entire life. As a child born with a birth difference myself..sometimes known as Amniotic Band Syndrome, it still saddens me 31 years later that I was rushed away at birth & my mother wasn’t able to see me immediately. The fact that I was born with four fingers on one hand fused together and not properly formed was unknown to everyone before my birth. My mother always says her only (delightful) shock was that I came out with such a light skin tone and blonde hair as she thought surely I’d have dark hair & olive skin tone. I thank you endlessly for your efforts and will always do what I can to promote and spread the word!!
As far as some of these comments starting with a ‘Lory’ I believe.. to discontinue a pregnancy for any reason, ESPECIALLY an ‘abnormality’ or anything such as Down Syndrome should be illegal..an absolute disgrace is even the thought. To say things such as ‘difficulties in life’ is absurd..you are assuming from a completely uneducated position. The examples of children born different who’ve not only lived fulfilling lives to themselves and those around them are endless, not to mention the children who’ve made major impacts and contributions to society whether in childhood
or adulthood. It’s absolutely shameful that society today is not accepting and therefore teaching our next generation that DIFFERENT IS BEAUTIFUL. Who is another human being to judge a soul that God created for a specific purpose on this Earth. I believe I was born missing fingers impart to teach others that different happens in all different ways, not everyone is born the same way, same race, same sexual orientation…etc. The sooner this message is understood by all the sooner ignorance as a whole can begin to fade. A ‘life filled with difficulties’ is clearly something that can also happen to a baby born physically and mentally ‘normal’ who are humans to decide what God has put in motion to be fulfilled for a specific reason we will never know. I consider myself of strong Christian faith, always striving only to love God & be kind to others, but in that faith are we not supposed to believe in miracles? In the way of ending a life in abortion due to ‘possibilities’ how are we as humans to judge? How are we to know that God is not in the midst of performing a miracle? I for one believe they can also happen in the womb..

Fantastic piece and a truly important subject. Thank you so much for writing about it. The way that a diagnosis is delivered can either make a family more able to deal with the challenges and joys ahead, or it can set them up for failure.

Again, great piece. My little girl has an extra chromosome (though not Down Syndrome) and our experience with diagnosis was terrible. There has to be a better way.

Thanks Rick. What a fantastic post. Spot on. I want to share this with as many doctors as possible! We didn’t know that our daughter had DS until she was born and my doctor seemed scared that I was going to tell him off! He asked politely if we had known beforehand would we have aborted, but I told him it would not have changed anything. I really think this part is super important for expectant parents….”I think connecting an expecting parent of child with Down syndrome to a parent of a child with Down syndrome is the most responsible, helpful and honest thing you can do to help a parent who has just received a Down syndrome diagnosis. In fact, I’m convinced that if every woman who’s baby has received a prental Down syndrome diagnosis could hang out with our son Noah for just thirty minutes the abortion rate for children with Down syndrome would be almost zero.” Our daughter is 2 now and we love her to bits. She is smart, communicating with over 80 signs and starting to replace some signs with words, independantly eating and helping to get dressed, on the verge of walking completely unaided, knows what she wants and doesn’t want to do! Just like any other child. It sometimes takes her a bit longer especially on the motor skills side but what’s the hurry, she’ll do things well in her own time. I am also happy to get in touch with any other parents with DS. If by a miracle you know of any English speaking families in Colombia let me know! We are part of the excellent Down Syndrome Corporation here so our daughter is fortunately receiving weekly early intervention classes and we are all reaping the benefits.

Thank you for your letter! I always thought it would be amazing to have a child with Down Syndrome. Instead, I became a Special Education teacher. I have heard many parents talk about things that doctors have said to them about their children, most of which should not have been said. They take their dreams and hopes away from them, leaving them with inaccurate information, and sadness. I’m glad to see someone saying something about it!! Bless you!

Wonderful story.
Wish we would of had that. Instead, we got the nurse with the worst bedside manners ever. We didn’t know our son has DS till he was born. I noticed the extra skin on the back of his neck, and his breathing. He would pick his little head up to breath and then he would let his little head drop down when exhaling. So I asked the one nurse about his breathing. My husband had just left to go home to our other 4 children. When this nurse came in and told me that our son has signs of DS. And that they usually have brain bleeds, heart problems, and many more health issues. I was devistated, crying I called my husband to tell him the news, he didn’t know how to take it. He was angry.. I told him everything the nurse told me as she hauled him away to get oxygen. She never once told me anything good about DS. Everything was negative. He Stayed in the hospital for 11 days and was the biggest baby in the NICU weighing 8 lbs 6 oz. when born. By the end of the week Dr. Told us he was the healthiest DS baby he has seen in over 3 years. Well, I have to say after 4 kids. This little guy is the smartest, great problem solver, and is 2 and a half right now.. And is very popular when we go shopping. My husband and I wouldn’t change him for the world.

[…] are so many different ways that the doctor can share the diagnosis (read this article by Noah’s Dad to OB/GYNs), but don’t let their presentation completely waver your emotions and decisions. There are […]

[…] Down syndrome. The news should not be delivered with great joy. While I appreciate most of what Noah’s Dad recommends in his letter to pediatricians, I disagree with one point. I do think it’s okay to express condolences, to say […]